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Month: March 2017

How quickly those side effects appear when the arsenic trioxide flows. I began my renewed daily infusions on Monday morning, and noticed almost immediately that I felt tired and kind of yucky all afternoon. I did finally manage to get myself outside in the evening, practicing on my new RipStik while the girls rode their scooters. Plus I got in a half hour or so on the new exercise bike. Today, however, I came home from the hospital, ate lunch, and proceeded to sleep the entire afternoon away, not getting up again until around 5:30pm.

Other side effects I felt right away: dry, itchy eyes; possibly a headache. I had a fairly big headache Monday evening, which kept me awake for a while into the night. Eventually it cleared up.

On the bright side (always gotta find those!), this does provide some interesting new information. Last time I started taking this chemo regimen I was already feeling quite sick. My low blood counts meant I was constantly fatigued, bleeding easily, and catching any infection that showed up. I also caught a fresh bout of influenza within a day of beginning the arsenic and ATRA—which brought aches, high fever, and all manner of other un-fun feelings. In great contrast, this week I begin the regimen with completely normal blood counts, no active infections, and a body which—although well weaker than normal—is at least getting a lot more movement in than it was in late January. This time, when I feel a new symptom I know that it’s coming from the treatment and not from something else that’s going on with me. As someone whose StrengthsFinder top-five includes Input, that’s a really cool feature of this repeated regimen.

It does surprise me quite a bit how quickly these effects showed up—after just one infusion! Presumably the chemo played a larger role than I realized in how I felt back when I was living in the hospital. This time around I do hope I manage to get into a good routine whereby I manage to get plenty of sleep at night, and still manage to move about and get things done in the afternoon. If I want to return to work anytime soon (which I do want to), I’ll need to do something like that.

Over the days since my last update, I have continued to feel better and better as I get more arsenic-free time under my belt. About March 9 or 10 I think my energy and focus levels crossed some magic threshold. Fairly suddenly, I was able to really begin to get some little things done around the house every day, as well as to begin organizing plans for some of the bigger things. I have now fully populated OmniFocus with a TON of tasks, most of which I’ve been putting off or forgetting about for a long while now. It feels good to get some things done each day.

My fitness has been improving, too. I can now do two push-ups in a row (up from zero a few weeks ago). Also I can run and jump a little bit, albeit not very fast and not very high, respectively. I bought an exercise bike/desk for my home office, which has provided huge benefits immediately. On cold and/or rainy days when a walk outside doesn’t look very appealing, I can still get in some good movement in on the bike. Because it has a desk where the handlebars would normally go, I can pedal at a 10mph rate or slower while reading, writing, typing, or doing other useful things. I am loving that.

Sadly, we did run into a medical setback at my oncologist appointment on Friday (3/17). That blood test that we were eagerly awaiting, with the expectation that it would find me in full remission…didn’t. It still found a very, very small about of cancer in my bloodstream. Immediate consequences of that: first, I’m going back to daily (seven days a week) chemo again, beginning Monday (3/20). Big bummer. Goodbye mornings at home; hello unhappy side-effects. Second, this does push back the timeline for my full recovery, and also pushes back the start of my two-weeks-on, two-weeks-off “consolidation/maintenance” phase. That means it pushes back the point where I can confidently commit to travel dates for things such as conferences and camping trips, because I don’t know yet what the treatment cadence will be. Also a pretty big bummer. I expect it’s delayed by at least three weeks, and possibly a couple more.

For now, I am choosing not to think about what happens if these extra couple weeks of full-time treatment don’t yield complete remission. I suspect (but don’t know) that at that point I would be put onto one of the more traditional chemotherapy drugs—which would make for way more toxic side-effects.

On the bright side, this time around I am going into the chemo regimen with a relatively healthy body and with an idea of how to keep myself active throughout. Hopefully that will alleviate some of the negative effects. I also get to live at home through the whole course, which I expect will help a lot with both keeping active and with feeling good about things. And which has a way better internet connection than the hospital. 🙂

Lastly, I do also look forward to some kibitzing with some of the nurses in the Abbott Northwestern infusion center and oncology station. I haven’t seen any of them in several weeks now. There are always silver linings on every ill turn.

The days just seem to slip away, and now I have eight days of catching up to do in this one update. Fortunately, a lot of that is because things are just chugging along without a lot of changes or surprises. It continues to be boring-in-a-good-way most of the time—but with a few tidbits of mostly good stuff to report.

Along with stopping the arsenic trioxide and all-trans retinoic acid (ATRA) on Wednesday of last week (March 1), I also had my Prednisone dose dropped from 40mg a day to 20. At this point I have no more need for any prednisone, but we’re ramping it down gradually because stopping it suddenly can lead to ugly withdrawal symptoms. I learned that that fatigue is one of those withdrawal symptoms, and that may explain why I was still so tired for a week after stopping the chemotherapy. Just as I stopped having arsenic make me tired, I had a relative lack of prednisone kick in to take its place. The fatigue continued pretty steadily, well into this week.

Last Friday (March 3) was the final submission deadline for the Agile2017 conference. 11 PM local time, to be specific. I spent most of the afternoon and all of the evening working on my submission, which had sat in an early draft state, getting no love for several weeks. I thought I would have time to get at least two proposals in, but just the one wound up taking me nearly until the deadline all by itself.

With less than an hour to go, I had completed a very-imperfect pass over it and put out a request for review help on Twitter and Facebook—not expecting much of a response given the short time frame. Boy, was I wrong. Within minutes I had responses and suggestions from about a half dozen agile-conference friends in three different countries. I managed to get two sets of changes in, and hit the Submit button with less than a minute to spare before the deadline. Whew! I do hope it gets accepted into the conference program, as I am quite excited to craft and run that session. Those readers who are interested and who have Agile Alliance membership log-ins can see it: https://submissions.agilealliance.org/agile2017/sessions/6716.

At first I was annoyed that the Agile Alliance put the deadline on a Friday night—don’t people have social lives? Not that I was going out, of course. However, after working on my proposal until exactly 11 PM and then needing a couple hours for the adrenaline to subside before I could sleep, I appreciated that the next morning was a Saturday. I came to regard that Friday night decision as quite wise indeed.

The weekend and early following week went more or less as my recent weeks have gone: lots of sleep and rest; 2-3 miles of walking on the days that weren’t too cold or rainy; enjoying time with family and visiting friends; thinking about doing things such as paying bills or responding to email, but never quite getting to it. It’s always nice to have visitors at the house.

Around Tuesday or Wednesday I think the prednisone-withdrawal fatigue finally began to wear off. I perked up a bit and actually began to get little chores and tasks done rather than just thinking about doing them. This marks the first time since diagnosis that I felt something close to a normal energy and motivation level, which was super nice.

Wednesday (March 8) brought some really, surprisingly-good news. I returned to my oncologist for blood work and a weekly follow-up. He looked genuinely surprised as he read the blood counts, and said something along the lines of “your numbers have jumped surprisingly far for just one week.” This was just eight days since my latest biopsy, and numbers were already into the range that would suggest full or near-full remission of the cancer. We expected that to take two or three weeks! I was well above the threshold for neutropenia, so now I can relax even more about being exposed to people. I am still to avoid sick people and crowded places, but both of those carry less urgency than a week prior.

And so: another bone marrow extraction for biopsy was scheduled for the next day: Thursday, March 9.

Thursday morning we arrived in the procedure room, where the technicians were setting up. When the RN walked in I was delighted to see that it was Kathy—the same one who had done my previous extraction with so little pain. I did not expect her to say what she then said: “Don’t get up on the table. We’re not doing a biopsy after all.” She had just gotten off of a conference call with my oncologist and a few other doctors, to talk about me and my case. If I understood her correctly, the doctors are attending an oncology conference next Wednesday, and they plan to present something which will include my case as an example of this treatment regimen being wildly successful and less disruptive than traditional chemotherapy. Rather than take another biopsy so soon after the last one, they would take a sample of my blood and send it down to Mayo Clinic for molecular analysis.

My doctor had mentioned to me back in the hospital that molecular blood analysis had been shown to be about as good as a biopsy at determining remission of APL. A biopsy was still the accepted standard for that determination, but he expected that in the not-to-distant future the need for a biopsy would be dropped in favor of the blood analysis. I had no idea that I would turn out to be one of the first patients in that future.

That was all pretty darn good news. No bone marrow extraction. Record-breaking recovery of blood counts after ceasing chemo (at least a record among my doctor’s patients). And now I am playing a small part in advancing the state of the art in APL treatment and research. Super, super cool. Three more lucky stars to count and add to my considerable total. I do not know what I did to deserve all these good turns.

Other, non-cancer related goodness this week: Aurora was in one of the school plays at Barton Open School, with shows on Wednesday and Thursday. As a second grader (the youngest class allowed to participate) and as a first-time actor in a school production, she only got to be in the ensemble rather than getting a principal part in the performance. She pretty much nailed it, and had a super-good time both during the shows and during all the practice and rehearsal sessions over the last couple months. Tricia and I were both soooooo, happy to see that. She also loves her singing lessons, which she recently picked up instead of the guitar lessons she had been taking for a couple of months. She’s clearly far more motivated to sing than to strum; and her fingers are still small enough that pressing hard on the frets hurts quite a bit. Not so singing.

This means that there’s now a brand-new acoustic guitar in the house with no one to play it. This might be the perfect excuse for me to pick up an instrument again after several decades off. Until I return to work, and as long as my fatigue levels remain low, I should have plenty of time for lessons and practice. Hmmmmm…

One bit of bad news: I got a horrible night of sleep last night, and felt a little off all day today (Friday the 10th). I hope to make that up tonight.

My final bit of update-y news, also of the good variety, is that after ten years of intending to set up a personal web site and weblog, I finally took the plunge, spent the time, and set one up right here: https://markus.silpala.com/. I also copied over ALL of my cancer updates from Facebook into the blog, so people can simply follow all the Previous and Next links and catch any entries they may have missed. The biggest benefit of a proper blog versus a bunch of public Facebook posts is that interested people can subscribe to the blog’s RSS feed and never miss a new update.

Because this is now my main (and only) blog, it won’t be only a cancer blog. Postings and articles on other topics—notably agile software development—will show up there as well. For those who aren’t in the software field and who only want to read about my journey with leukemia, you can use this link to see only the posts that have the “Cancer” category attached: https://markus.silpala.com/category/cancer/.

Special thanks go to Amitai Schleier, who offered to put all of my existing Facebook updates into a blog of his making, and then provided just the right level of nudging and cajoling to get me to do the work myself (which I wanted to do). Without his contribution I likely would still be procrastinating the creation of a blog and a site.

Those of you who prefer to keep reading my updates on Facebook: fear not. Although this and all future posts will be published first on the blog, I will continue to duplicate them in public FB posts so that people can continue to read, react to and comment on them as you have so far.

Lesson (re)learned tonight: these posts get REALLY long when I let eight days go by between them. It reminds me of how a team that doesn’t do retrospectives often enough winds up having them take hours in order to dive deeply enough into all the material—whereas weekly or even biweekly retrospectives can be fairly brief and still have sufficient depth and breadth. Now that I have the site up and running, I expect I can find time to write an update every day or two now. The last few days have been more about getting the site set up and getting all those existing posts copied over from Facebook. That has been a big part of why I didn’t post an update sooner.

That is all for now. Thank you again and ever so much for your support and encouragement. It means just as much today as it has throughout my diagnosis, hospitalization, release and recovery. Keep it flowing.

No hospital! Tricia managed to get up without waking me, so I nearly slept in and got to take the morning easy. Still got up for goodbye hugs before the girls went off to school, though. 🙂

I felt quite tired all day, which I suppose isn’t surprising. It’s just my first day without an in-flow of toxins. Interestingly, my muscle cramping was significantly worse today than before. It treated it with a long bath of epsom salts (thank you, Krisha!), which helped a bit.

Minnesota was again chilly today, but I still managed an hourlong walk in the late morning.

We had date night tonight, during which we did our usual low-key option: a quiet dinner and time together at Studio 2 Café. While there I even drank my first beer since being hospitalized. I do not plan to make that a habit, but it sure tasted good after the long break.

That’s about all I have to report on the day. Sometimes boring is good. 🙂

First, let’s cover the not-so-good parts: I still have neutropenia. The numbers inched up yet again since yesterday. My Absolute Neutrophil Count went from 200 to 300.

Little good news: when it passes 500 I will no longer be neutropenic; at my current rate I should be there within a few days.

Also not-so-good but fairly minor for now: for the first time since my discharge, my body temperature measured above 99º F today. 99.3 to be exact. That’s not high enough to warrant any action, but was kind of a bummer to see. I need to monitor it regularly at home, and call the clinic if it goes above 100.

Further good news: I asked my doc what restrictions he recommended I follow for my neutropenia in the meantime, and he said simply: avoid crowds and sick people, and make sure everyone in the house washes their hands thoroughly and often. No need to hole up in my bedroom. No need to wear a mask everywhere else. No need for healthy visitors wear masks. Woo-hoo!

Even more good news: our cat Schmutzig saw the vet this morning and was diagnosed with a bladder infection. I call this good news because it explains all of her observed symptoms and is highly treatable. She’s on antibiotics for the infection and on pain meds because her lower belly is very sore and sensitive right now. All should be well with her in a matter of days. Meow.

She also enjoyed the car ride immensely. For real. Schmu is a very special cat.

Today’s crazy-fantastic, turning-point news: my biopsy results came back about as good as they could have been. The treatment target was for blasts and promyelocytes to be less than 5% of all blood cells. Mine were 1%. Have I mentioned lately how fortunate I feel?

This does not mean I have achieved full remission yet. It does mean that, beginning today, I am stopping all cancer treatments (arsenic trioxide and ATRA) until all of my blood counts return to normal. No more daily infusions for a while. No more spending most of every morning in the hospital. In fact, tomorrow will be the first day since January 22 that I don’t have to go to the hospital at all. Wow.

This also means that, as my body flushes out the toxins and medications, I should see my various side-effects fade: rashes; chapped lips; dry and itchy eyes; blurred vision; fatigue; inner-ear pressure; slightly-swollen face. All of this will make it easier for me to begin reconditioning my muscles to again enable me to run, jump, climb and play again.

To keep some perspective on this, I am not yet cured, nor completely out of the woods yet. I’ll be visiting my doctor and getting blood work weekly to see when all my blood counts reach their normal levels. My doc expects this to take 2-3 weeks. Once they do that I get another bone marrow biopsy, and we expect that to also be completely normal—to find no cancer at all. If that all happens, that’s when I will be in full remission.

The next step after remission is to begin what’s called the Consolidation phase of treatment. I will go back onto the arsenic trioxide and ATRA, but only five days a week instead of seven and only for two weeks straight. Two weeks on, then two weeks off, then two weeks on, then two weeks off—for a total of six cycles, or 24 weeks. If all goes well and I get to the end of that, my treatments are essentially complete. I will be checked twice yearly for signs of relapse.

Things still have plenty of ways to go wrong in all of that, but my progress so far gives reason for cautious optimism. Today has been a huge relief for Tricia in particular.

And that, as they say, causes me to smile. Thank you all so much for your ongoing support.